last straw please help

[whatrdreamsmadeof]

I THINK I'VE MAXED OUT ON ALL THIS STUFF, I WENT TO MY SECOND SLEEP DR. THIS ONE IS A PULMONARY DR/SLEEP SPECIALIST. WHILE HE DID DISAGREE WITH THE FIRST DR, A NEURO....HE DOES NOT BELIEVE IN AUTO MACHINES, HE SUGGESTED I LOWER MY PRESSURE TO 7, SAYING THAT IT DIDN'T MATTER IF THE MACHINE PUTS OUT 1 TO 2 CMS LESS THAN WHAT IT IS SET FOR......CAUSE THAT IS SUCH A SMALL AMOUNT.......HE SAID CENTRALS ARE NOT IMPORTANT UNLESS I WAS "PRESENTING OTHER SYMPTOMS" SO I GUESS I'LL WAIT FOR THE STROKE.........HE SAID THE AHI, AI,HI, NUMBERS DON'T MEAN ANYTHING.......DUH THEN WHY DO THE TITRATION.AT ALL.......HE HAD THE NERVE TO PULL OUT HIS PDA CALL THE DME ASKED WHAT THE PROBLEM WITH THE REMSTAR SCRIPT THE OTHER DR, WROTE AND THEN TOLD THE DME TRY CPAP. COM..BOTH THE DR, AND DME ARE SENTARA MEDICAL..
HE SUGGESTED PERHAPS I SHOULD TURN IN THE VANTAGE AND GET A DENTAL DEVICE........SO WHAT NOW..... ANY SUGGESTIONS WOULD BE APPRECIATED,,,, I AM SO FRUSTRATED AND DEPRESSED.........ELLEN

[whatrdreamsmadeof]

JUST TO ADD TO THE POST ABOVE, THE DR, ALSO SAID THE FACIAL SWELLING WAS COMING FROM AIR PASSING THROUGH THE TEAR DUCT AND DRYING OUT THE EYES.......???ANYONE KNOW ABOUT THIS????????////
THANKS ELLEN

[Snoredog]

Looks like you went from one quack to another.

Get out your first PSG what were the results from it?

Wake (in % below)
Stage1:
Stage2:
Stage3:
Stage4:
REM:

Any leg movements noted during the first study? Y/N
Any snoring noted on first study? Y/N
Any CA or MA events noted on the study? Y/N

How long was the study (in minutes): 000 minutes.
How many HI events were seen?
How many AI events were seen?
What was the AHI they came up with?
How low did your SAO2 oxygen levels get?

What pressure was found during your last PSG?
What machine are you using need the mfg, need the model name?
What mask are you currently using?

What appears to be the biggest problem using the machine?

[LDuyer]

I agree with Snoredog, quack, quack, quack!

Forgive me, but I've not read most of your previous posts, but did you ever get a reason why the fist doc wanted you to have another sleep study? Did you have it? And as snoredog asked, what were the results? Why does he want to lower the pressure? And did he even give a reason why he doesn't believe in autos? Have you still been having symptoms? (again, I haven't read your posts, perhaps you said.)

The AHI numbers don't mean anything??? OMG! Ok, so why even bother having a sleep study. A dental device? Did he give a reason why? I don't mind doctors having opinions, but they HAVE to back it up with reasons, such as they are. Gosh, no wonder you're frustrated and depressed!


Linda

[snoregirl]

I went back and read the last 2 of your threads. You had a machine set at 9 I believe.

I can't exactly figure out the main issue is with your therapy. Are you still not sleeping well? I saw something about facial swelling and air blowing in tear ducts...

Do you have a copy of your prescription ANY PRESCRIPTION? Do you have the resources to buy a machine yourself? That prescription will do online.

Best advice I can give you is ditch both doctors and save yourself the copay every time you see them. Neither seem to want to listen to you.

Go buy an auto unit with the prescription if you have it and the software and do it yourself with help from here.

Another idea. Johnny's under the nose trial thing. $150 up front and you wear it and CPAP.com has physicians analyse and write you a prescription.

If you can use a nasal pillow there shouldn't be air blowing in your eyes.

What mask do you have?

Do you have a family doc that you trust that would write you a prescription you could use if you don't have one from the other two --- I hesitate to call them physicians?

Just throwing out ideas without knowing exactly why you are having trouble with the machine you currently have. Tell us more.

[bdp522]

You can choose to NOT believe in the easter bunny, Santa Clause, or the tooth fairy. Apaps ARE real, they DO exist, you CAN see them! This doctor is most definitely a quack! Don't give up...there has to be a good doctor out there somewhere. Better yet post all the info Snoredog asked for and the wonderful people here will help!

Brenda

[whatrdreamsmadeof]

my first study results were as follows:
awake 11.41 percent
stage 1 16.69 percent
stage 2 78.03 percent
stage 3 .59 percent
stage 4 00 percent
rem 4.70 percent
movement .12 percent

plm with arousals 55
plm with awakenings 0
plm in sleep 391
isolated movements 105
respiratory related 41
total numbers 446

[Snoredog]

My comments as follows:

awake 11.41 percent (they usally don't count awake).
stage 1 16.69 percent (starting off w/eyes closed relaxed).
stage 2 78.03 percent (where you land when an arousal happens)
stage 3 .59 percent (stage 3&4 considered deep sleep).
stage 4 00 percent (3&4 very low, meaning no deep sleep).
rem 4.70 percent (should be above 20%, you are getting very little if any REM, this is where you dream).

WHAT was your oxygen levels? Should be listed under SA02 level?
--------------------------
Information below has to do with PLM or Periodic Limb Movement, aka Restless leg syndrome).

movement .12 percent
plm with arousals 55
plm with awakenings 0 (means leg movements were NOT the cause of EEG seen awakenings).
plm in sleep 391
isolated movements 105

respiratory related 41 (these are probably Obstructive events).
total numbers 446 (this means nothing).

Missing information: AI (apena) and HI (hypopnea), snore and oxygen desaturation information.

I see your problem, you don't give your doctors all the information they ask for to determine the cause of the problem. If you want me to help you I need the information ask for.

[whatrdreamsmadeof]

total sleep time 425.25
supine 107.50
side 318.00
prone 0.00
total apena and hypopneas 69
total apena 1
central 0
obstructive apena 1
mixed apena 0
toatl hypopenas 68
central 0
obstructive hypopena 68
mixed hypopneas 0
total rem events 10
lowest sp02 82 percent
mean spo2 95 percent


titrated at 9 cm with
total apenas, htpopneas 12
total apneas 12
central apneas 11
obstructive apneas 1

at 5 pressure with
total apenas and hypopneas 1
total apenas 0
central apneas 0
obstructive apenas 0

dr. set cpap at titration of 9cm straight cpap
did not work got an auto and best # are for setting of 7-13 but still very restless sleep very tired.

[Snoredog]

[quote="whatrdreamsmadeof"]total sleep time 425.25
supine 107.50
side 318.00
prone 0.00
total apena and hypopneas 69
total apena 1
central 0
obstructive apena 1
mixed apena 0
toatl hypopenas 68
central 0
obstructive hypopena 68
mixed hypopneas 0
total rem events 10
lowest sp02 82 percent
mean spo2 95 percent


titrated at 9 cm with
total apenas, htpopneas 12
total apneas 12
central apneas 11
obstructive apneas 1

at 5 pressure with
total apenas and hypopneas 1
total apenas 0
central apneas 0
obstructive apenas 0

dr. set cpap at titration of 9cm straight cpap
did not work got an auto and best # are for setting of 7-13 but still very restless sleep very tired.

_________________

CPAPopedia Keywords Contained In This Post (Click For Definition): Titration, CPAP, auto[/quote

The above data shows you do better at 5cm pressure than you do at 9cm pressure because you are at risk of to central apnea (you had 11 central events under cpap treatment @9cm pressure).

Then it shows you had 0 (zero) central events at 5.0cm.

The problem is: you do not KNOW at what pressure the central events are being triggered (we know that 9cm will trigger them, so you have to be lower than 9cm with pressure).

There should be a titration "table" which lists out the pressures used and events seen at that pressure when you sleep. it should start out at 5.0cm and go up from there.

Your data shows you have mainly obstructive hypopnea (count=68) with NO cpap pressure. It also shows your SAO2 levels dropping to 82% (not good).
The 5cm pressure should bring your SA02 levels back to normal levels.

But if you continue to feel lousy I suspect you may still be having obstructive/centrals at the 5cm pressure. Because you have low threshold for centrals (only 9cm pressure) you cannot really use a autopap machine unless you set it for straight cpap mode. You however need to determine at what pressure it starts triggering the central apnea. Even if you have only a few of those (like 11) you can feel really lousy the next day from them.

My suggestion is this:

1. Talk to your doctor or sleep lab about those centrals, ask: at WHAT pressure do they start to appear?

The sleep lab should be able to give you that information if not already included on the titration "table" report. You then MUST avoid that pressure with any cpap (meaning you cannot rely on a autopap to avoid them).

Note: You HAVE to know at what pressure does it trigger the centrals, then you must set the machine to cpap/cfle mode and set 1cm UNDER that pressure. If you have EncorePro reporting software and used Derek's MyEncore with it, it should show a "dip" at the ideal pressure in the AHI vs. Pressure report.

Your first titration appears botched (where they found the 9cm pressure). If the tech had been doing his/her job they would have stopped with pressure when the first centrals where seen. These centrals would most likely have awaken you during the study (at which point they put on the mask and start the second half of your study).

At this point and based upon the way you feel, I suspect you may be having some of those 69 hypopnea at that 5.0cm pressure. Since you know that 9cm can trigger centrals, I would stay well below that pressure.

This means you would set the Remstar Max. pressure=8.0cm or even less. You can still set the Min. =5.0 cm pressure. I think you can still use the autopap but you have to set it up correctly, I suggest:

Machine settings:

Mode=AFLE
CFLEX=2
Min. pressure =5.0
Max. pressure =7.0
Timer=00:00
Alert=0/1
LED's=0/1

Your new range becomes 5.0 to 7.0cm. If 5.0cm pressure clears the events like the last titration study shows, it should NOT move off that pressure. But if obstructive event continues at that pressure the machine can move up to 7.0cm to clear them (again, we do NOT know the ACTUAL pressure that triggers your centrals so we are guessing it is higher than 7.0cm).

Ideally, you really need to know what that pressure is that triggers those.

I would give those settings a try (5.0cm to 7.0cm) in AFLE mode and see how you feel the next day.

Lastly: Don't forget about those PLM's. is your doctor going to do anything about those? The arousals associated with them can interrupt your sleep architecture and result in lousy sleep (those arousals can take you from deep sleep back to Stage2). I would suggest talking with your doctor for possibly a 1-week trial on Requip or other medication to see if any improvement.

[krousseau]

Anatomically the tear ducts do drain into the nasal passages. So if you have large tear ducts I suppose it would be possible for the CPAP pressure to force air into the ducts. Stranger things have happened.

[DreamStalker]

Hang in there Ellen -

I agree with Snoredog ... it appears you are sensitive to high pressures not only for your face swelling but also for central apneas. You will need to keep your pressures below 9 cm and possibly lower ... which means that you don't really need an APAP. Your Elite should do you just fine. You can use the EPR if you need to but you may not even need that either.

Take care ... I know you have the right attitude so keep on keepin on!

- roberto